Describing dissociative seizures
There are lots of different types of seizures, and they happen for many different reasons. Some are caused by conditions such as low blood sugar (hypoglycaemia) or a temporary change to the way the heart is working.
What seizures all have in common is that they are usually sudden, short, and cause a change in the person’s awareness of where they are, what they are doing, what they are thinking or what they are feeling.
Some people have more than one type of seizure. For example, around 15 in every 100 people with non-epileptic seizures (NES) also have epilepsy.
If you, or someone you know, has been diagnosed with non-epileptic seizures it may be helpful for you to identify the type of seizures that are relevant to you, and how you feel about them.
Are all seizures the same?
Epileptic and non-epileptic seizures can look the same and have the same features, but the difference between epileptic and non-epileptic seizures is their cause.
Epileptic seizures are caused by a disturbance in the electrical activivty of the brain (and so they always start in the brain). Our brain controls the way we think, move and feel, by passing electrical messages from one brain cell to another. What happens to the person during the seizure depends on where in the brain this disrupted activity happens.
Non-epileptic seizures (NES) are not caused by disrupted electrical activity in the brain and so are different from epilepsy. They can have a number of different causes.
What causes non-epileptic seizures?
Types of NES
Non-epileptic seizures (NES) can be divided into two types: organic non-epileptic seizures and psychogenic seizures.
These seizures have a physical cause (relating to the body). They include fainting (syncope), and seizures with metabolic causes such as diabetes.
Because organic NES have a physical cause, they may be relatively easy to diagnose and the underlying cause can be found. For example, a faint may be diagnosed as being caused by a physical problem in the heart. In these cases, if the underlying cause can be treated the seizures will stop.
Some NES have a psychological cause and are called ‘psychogenic seizures’ because they are caused by the impact of thoughts and feelings on the way that the brain works.
Psychogenic seizures include different types.
- Dissociative seizures are involuntary and happen unconsciously. The person has no control over them and they are not ‘put on’. This is the most common type of NES.
- Panic attacks are a psychiatric condition. They can happen in frightening situations, when remembering previous frightening experiences, or in a situation that the person expects to be frightening. Panic attacks can cause sweating, palpitations (being able to feel your heart beat), trembling and difficulty breathing. The person may also lose consciousness and may shake (convulse).
- Factitious seizures happen under some conscious control. An example of this is when seizures form part of Münchausen’s Syndrome, a rare psychiatric condition where a person is driven by a need to have medical investigations and treatments.
Other names for non-epileptic seizures
Non-epileptic seizures are sometimes known by other names such as non-epileptic attacks. People who have non-epileptic seizures may be described as having 'non-epileptic attack disorder' (NEAD).
These terms are not always helpful because they describe the condition by saying what it is not rather than saying what it is.
NES used to be called 'pseudoseizures' but this name is unhelpful because it sounds like the person is not having 'real' seizures or their seizures are deliberately 'put on'.
A newer name for non-epileptic seizures is 'dissociative seizures'. This is helpful because it does not describe seizures in terms of epilepsy. It is also recognised by the World Health Organisation (this means that it is included in the International Classification of Diseases: a list of all known diseases and conditions).
We all react to frightening or stressful situations differently. When we are frightened we might feel physical symptoms such as a racing heartbeat or feeling sweaty. When we feel sad, we might cry. So how we feel emotionally can sometimes cause a physical reaction.
When we have experiences that are extremely frightening or upsetting, sometimes they are so emotionally difficult for us to think about that we cannot consciously cope with how this makes us feel.
In some cases, we will unconsciously hide or 'repress' the memory of these experiences. These memories may always remain hidden and we may never remember the events that have happened.
For some people the memories of these painful past events can suddenly come up or 'intrude' in to their thoughts or awareness. This might happen during an emotional or stressful situation, or when there is something in the environment that unconsciously triggers a distressing memory.
Dissociative seizures can happen as a cut-off mechanism to prevent bad memories being relived. The person splits off (or dissociates) from their feelings about the experience because it is too difficult to cope with. The seizure happens because their emotional reaction causes a physical effect.
These seizures are an unconscious reaction so they are not deliberate and the person has no control over them.
One way to describe this is by comparing it to 'domestic deafness'. This is the experience of concentrating so hard on something that we don't realise when something when someone is talking to us. It can feel like 'turning the volume down' to drown out what is happening around you so you can concentrate. Dissociative seizures are like the body's way of 'drowning out' a frightening or painful memory so that it doesn't enter into our thoughts.
What causes dissociative seizures (DS)?
Any experiences that we have, whether good or bad, can have a deep and long-lasting effect on us, and everyone has their own way of dealing with them. Dissociative seizures (DS) are often caused by traumatic events such as:
- severe emotional upset (such as the death of a loved one);
- psychological stress (such as a divorce);
- difficult relationships;
- physical or sexual abuse; or
- being bullied.
It can be hard to find the cause of someone’s DS. For some, they start shortly after a specific event. For others, they may not start until years later, or they may start suddenly for no apparent reason. Once DS have started, they might be triggered or brought on when the person is stressed or frightened. Or they might happen spontaneously in situations that are not stressful or frightening. Sometimes, even the fear of having a seizure can, in itself, trigger a seizure.
Finding the original event that caused the DS to start might help to find a way to treat the seizures. But this is not always possible, and it can be hard to talk about traumatic or difficult events.
Seizures caused by a delayed response to a very stressful event or situation, for example, being in a war or a disaster, are a response to post-traumatic stress disorder (PTSD) - a condition that sometimes happens after a traumatic event. Duting the seizure the person may cry, scream or have flashbacks (sudden, vivid memories of the event). They may not remember the seizures afterwards.
Who has dissociative seizures (DS)?
DS can happen to anyone, at any age, although some factors make DS more likely. DS are:
- more common in women;
- more likely to start in young adults;
- more likely to happen to people who have had an injury or disease, or who have had severe emotional upset or stressful life events; and
- more common in people with other psychiatric conditions (such as depression, anxiety, personality disorders or people who self-harm).
How are seizures diagnosed?
If you have seizures your GP will usually refer you to a specialist for diagnosis. This will usually be a neurologist to see if the seizures are epileptic. Or you may be referred to a psychiatrist or psychologist (as NES are usually classified as a psychiatric condition).
Taking a personal history
Tests used to find the cause of seizures cannot, on their own, confirm a diagnosis. However, taking a ‘personal history’ can help to find the cause of your seizures. This includes:
- looking at your neurological history (about your brain and nervous system and its development);
- looking at your psychological development and mental health, including whether you have had depression or other psychiatric conditions, or have been subject to stress and trauma in the past;
- looking at whether there is a family history of depression or other conditions;
- looking at the history of your seizures, such as when they first started and when they happen; and
- looking at whether you have been diagnosed with epilepsy but your seizures have never been controlled with anti-epileptic drugs.
What happens during the seizure
Asking you about what happens to you during a seizure can be helpful to find the cause. If you don’t remember your seizures, you might like to bring along someone who has seen your seizures.
The specialist might ask you about:
- when your seizures happen;
- whether you get any warning before a seizure happens;
- what happens to you during the seizure or, if you don’t remember, a witness can help describe what happens to you;
- how long the seizures last;
- what you remember, if anything, about the seizure afterwards; and
- how you feel afterwards and how long it takes you to recover.
Some tests are used to rule out other causes of seizures, including epilepsy.
- Medical examinations and blood tests can be used to check your overall health and see if your seizures have a physical cause such as diabetes.
- Scans such as CT (computerised tomography) or MRI (magnetic resonance imaging) are used to form a picture of your brain. This may show a physical cause for epileptic seizures, but would not usually be helpful in diagnosing NES.
- An EEG (electroencephalogram) records the electrical activity of the brain. It is often used to see if seizures are caused by disrupted brain activity, which helps to diagnose epilepsy. NES are not caused by changes in brain activity.
- Video telemetry involves having an EEG and being filmed at the same time. This compares what a person is doing with what is happening in their brain during the seizure, and can often show the difference between epileptic and non-epileptic seizures. This can help to diagnose epilepsy (if, during a seizure, your brain activity changes) or diagnose NES (if, during a seizure, your brain activity does not change).
The specialist will usually explain the results of these tests to you. If the tests show no neurological or physical cause for your seizures, and your specialist thinks it might be NES you may be referred to a psychiatrist or a psychologist for diagnosis.
Treatment for NES depends on their cause. Your specialist may talk to you about what treatment options might be helpful.
If you have seizures that are not epileptic they will not respond to anti-epileptic drugs (AEDs).
If you already take AEDs, for example if you were previously diagnosed with epilepsy, your specialist may suggest you gradually reduce them. If you have NES and epilepsy, you will usually continue to take AEDs for your epileptic seizures.
If you also have anxiety or depression, your specialist might talk to you about whether other medication, such as anti-depressants, might be helpful.
Other forms of treatment
Psychotherapy is the recommended treatment for DS. Psychotherapy refers to a group of ‘talking’ treatments. Mental health professionals, including psychiatrists and psychologists, are trained to give it.
Cognitive behavioural therapy (CBT) is often recommended for DS. CBT looks at how you think about things, how this affects you physically and emotionally, and how it affects what you do (your behaviour). By changing the way you think about things, such as how you think about yourself, other people and the world around you, this may change the way that you behave. CBT doesn’t only look at what has happened to you in the past but also at how things are affecting you in the present. It looks for ways to help you to view current situations more positively and cope with stressful events.
CBT can take several months or longer as it may take time for you to feel comfortable talking about your experiences and feelings.
Living with dissociative seizures
First aid for DS
The general first aid guidelines for DS are the same as for epileptic seizures:
- keep the person safe from injury or harm: only move them if they are in danger;
- if they have fallen, put something soft under their head to protect it;
- allow the seizure to happen, don’t restrain or hold them down; and
- stay with them until they have recovered.
Financial help and benefits
If you have seizures of any kind you may be able to apply for benefits, depending on the effect that your seizures have on you. Whatever the cause, seizures can be sudden and unpredictable.
Driving regulations for the UK are set by the Driver and Vehicle Licensing Agency (DVLA). DS usually come under the regulations for ‘loss of consciousness or loss of, or altered, awareness’ which means that you need to stop driving and tell the DVLA that you have DS.
These regulations are based on the possibility of having a seizure while driving and the risks this could bring.
Seizures and disability
The Equality Act 2010 came into effect in October 2010. It replaces and brings together nine previous laws that aimed to protect people against discrimination, including the Disability Discrimination Act 1995 (DDA). Someone has a disability if they have:
- "a physical or mental impairment which has a substantial and long-term adverse effect on the ability to carry out normal day-to-day activities".
Here 'substantial' means it is difficult or time-consuming to do activities compared to someone without a disability, and 'long-term' means at least 12 months. 'Day-to-day activities' include being able to get around, hear, see, remember and concentrate.
The Equality Act does not include a list of every disability covered. Although epilepsy is listed as a physical disability, DS is not listed. To be protected by the Equality Act you need to show that you meet the definition above.
How you feel about your diagnosis
Being diagnosed with any condition can cause many different emotions, and can affect many parts of your life. You may be relieved to know what is causing your seizures. Or you may find it hard to come to terms with, particularly if you were previously diagnosed with epilepsy and have now been diagnosed with DS.
Being diagnosed can also feel quite scary or upsetting because of the stigma around how psychiatric conditions are sometimes viewed. Understanding that DS can be your body’s natural way of reacting to stressful situations might be helpful.
There is no ‘right’ way to feel about your diagnosis, but being able to accept it can be part of helping to improve your seizure control.
You might like to call our confidential helpline to talk about your diagnosis and how you feel about it.
Provides information, support and medical advice.
Non Epileptic Attacks
Information provided by a team of healthcare professionals.
STARS (Syncope Trust And Reflex anoxic Seizures)
Provides support and information.
© Epilepsy Society
Information produced in March 2012